On February 28th, the pharmaceutical industry has the opportunity to support and celebrate patients with rare diseases that they serve by bringing focus to Rare Disease Day.
Rare Disease Day, which was first celebrated by the European Organization for Rare Diseases in 2008, helps to raise awareness of rare diseases that affect 300 million people globally.
Instead of an annual celebration, the European Organization for Rare Diseases chose the leap year date to celebrate the community of rare individuals it serves. “The organization saw this as a ‘rare’ date that happens only once every four years,” says Brandon Salke, head pharmacist in charge at Optime Care. “Since then, Rare Disease Day has been observed on the last day of February, a month with a ‘rare’ number of days each year.”
By bringing attention and focus to rare diseases on the 29th, the goal is to illuminate the importance of improving access to treatment and representation of the individuals affected by rare disease and their families or caregivers. From pharmaceutical executives to specialty pharmacists, anyone in the industry can take an active role in the day.
While NORD is the official partner in the US for Rare Disease Day, there are also many disease-specific organizations that participate as well. Outside of official partnerships and organizations, Salke suggests that social media is a great tool used by many to effectively promote focuses and what is important in the world of rare disease.
At Optime Care, every employee, from pharmacists to care coordinators, has built an expertise around the patient population they serve, and therefore believe an active role in advocacy for these rare disease patients should be taken by those in the industry every day. “As specialty pharmacists are interacting with patients and families of rare diseases on a daily basis, the pharmacists learn firsthand the struggles and challenges these patient populations deal with,” says Salke. “Specialty pharmacists who are able to advocate for these patients have the potential to change the lives of those they serve.”
As a patient-first mindset always comes first at Optime Care, in addition to pushing recognition of rare diseases on Rare Disease Day, the need for advocacy on a daily basis continues to take precedence. From diagnosis to treatment, building awareness of rare diseases can be life changing for patients in these lesser-known populations.
“Generally, these rare diseases or conditions are much more advance and can be more severe or even life-threatening without proper treatment,” says Salke. “Awareness and dedication to these diseases is vital for these patients to improve the access to treatments to help them lived a fulfilled life.”
So, we challenge you: How can you extend your reach on Rare Disease Day (and every day) to promote rare disease and lift the patient populations around you?
Ask yourself: Who might be listening? Whose life might you change on the 28th? And whose life can you change on every day after that?